I blogged quite a bit about the event in 2015 while I was waiting for the long anticipated external fixator surgery. During that time, I had endless amounts of time to sit and type. Last year was a different story - I had just moved back out on my own, was getting back in the swing of school, and was slogging through clinical shifts with my trusty cane. At that point, we (my surgeon, family, boy-friend at the time, and I) were all hopeful that my leg would heal on it's own. But now we're another year further. My leg is still as broken as ever. Surgery is unavoidable. And my leg hurts pretty much all the time. I may not have a chronic bone infection anymore, but I'm not better per se either. I'm not quite sure where that leave me...
Anyways. In honor of the unfortunately but understandably cancelled Invisible Illness Awareness Week and my yet-to-heal broken leg (also quite unfortunate), I've gone a head and completed the 30 Things About My Invisible Illness (er.. medical problem in my case?) meme.
As usual, I find it fascinating to see how my answers to the questions change over time. The links to my previous answers are here, here (near the bottom of the post), and here (left link is 2011, middle is April 2015, and right is September 2015).
30 Things About My Invisible Illness You May Not Know
1. The illness/chronic condition I life with: Non-union of my right tibia after treatment for chronic osteomyelitis (aka bone infection which I had since February 2006, diagnosed summer 2011, relapse diagnosed early 2015).
2. I was diagnosed with in in the year: I was diagnosed with the non-union in May 2017. My original illness was chronic osteomyelitis, or a chronic bone infection, which I had since February 2006 when I had a compound fracture of my right leg. The infection was misdiagnosed until summer 2011. Treatment finished in October 2012, but the infection showed signs of being back sometime in summer/fall 2014. The relapse was diagnosed in early 2015. After aggressive surgery in August 2015, I am infection free, but at this point my tibia hasn't healed.
3. But I had symptoms since: Initial injury was in February 2006. Non-union since May 2017.
4.The biggest adjustment I've had to make is: Letting go of the expectation that each new surgery or tratment will fix my leg - I've always hung onto the hope that my leg would get better, but it's been over eleven years since it first broke it still hasn't healed.
5. Most people assume: That it's not possible to walk on a broken leg and that there is no way that I am able to work as a nurse.
6. The hardest part about mornings is: The first few steps once I get out of bed. All the muscles in my right leg are stiff; those first few steps are incredibly painful.
7. My favorite medical TV show is: E.R. (It's nowhere like real life, but much more realistic than Grey's Anatomy).
8. A gadget I couldn't live without is: My laptop - it allows me to listen to music, watch movies, and play LOTRO. I can use it without having to stand or walk around.
9. The hardest part about nights are: Bone pain. I get a lot of bone pain at night, and it's always worse after a couple of consecutive days of twelve hour shifts.
10. Each day I take vitamin C and a multi-vitamin. If needed, I take medication for pain.
11. Regarding alternative treatments, I: Meditate and use relaxation techniques. Once my leg is better, I want to do yoga.
12. If I had to choose between an invisible illness or a visibile one, I would choose: A visible illness. The bone infection was invisible - people couldn't see what was wrong with me so they always questioned why I didn't feel well or was so tired. Now that people see how poorly I walk, especially when I am tired or in pain, they don't question me when I say that I am tired or in pain - they just nod and ask if I need to sit down.
13. Regarding working and career: I am a registered practical nurses working on an oncology/palliative care unit. I am employed as a casual nurse - this gives me a lot of freedom because I can pick up however few or many shifts I want to. If my leg hurts, I don't have to work a lot' if my leg feels great (or, more realistically, just okay), I accept more shifts. Once I am done with the probation period at work, I will take medical leave to have surgery.
14. People would be surprised to know: That the issues that I currently have with my leg are related to the initial break when I was thirteen. Also, apparently the thing bone in your lower leg (fibula) doesn't actually bear any of your weight. When it does bear weight, it tends to bend, and that hurts!
15. The hardest thing to accept about my new reality has been: Not being able to do everything I want to because my leg just hurts way too much. If my leg was fine, I would be applying for the RPN to RN bridge program right now. I would also be looking for a full-time job. Instead, I am waiting to have more surgery.
16. Something I never thought I could do with my illness/medical problem that I did was: Complete both my undergraduate degree and nursing diploma and then start working as a nurse in a hospital.
17. The commercials about my illness/medical problem: There are none.
18. Something I really miss doing since I was diagnosed: Going on long walks (heck, even going on short walks) without pain.
19.It was really hard to have to give up: Feeling invincible and that I could do anything and everything I wanted to in life. When you become ill, you have to come to terms with your body, its physical limitations, and the fact that you are human (and, to some extent, your own mortality).
20. A new hobby I have taken up since my diagnosis is: Cross stitching, making handmade decorations for my room, and puzzles e.g., crosswords, sudoku.
21. If I could have one day of feeling normal again, I would: Go for a long walk as the sun is rising in a quiet neighborhood or go on a weekend long hiking adventure in a forest.
22. My illness/medical problem has taught me: To enjoy the simple pleasures - birds singing outside my window, watching flowers bloom, sharing a quiet moment with a friend or loved one. The biggest and most extravagant things in life are not always the best or most inspiring. Working hard and achieving my goals are still important to me, but if the world fell apart tomorrow, these basic things would still be here, bringing joy to my life and helping me through the rough patches.
23. Want to know a secret? One thing people say that gets under my skin is: "Why are you limping?" and "Have you always walked like that? I've never noticed before..." Trust me, I know how badly I walk. I can't help it. If I could, I most certainly would. What I don't need is for everybody I know to point it out to me. I assure you, I am already more aware and self-conscious about this than I want or need to be.
24. But I love it when people: Offer me a seat on the bus!
25. My favorite motto, scripture, quote that gets me through tough times is: "Worry does not empty tomorrow of its sorry. It empties today of its strength." - Corries Ten Boom. Even after all this time, I still struggle with this - it's a work in progress.
26.When someone is diagnosed, I'd like to tell them: Bone infections, external fixators, countless surgeries, and non-unions really suck. Ignore all the people who brush it off as "just a broken leg" because, at this point, you're way beyond just broken leg territory. You're going to be doing a lot of sitting on the sofa so this is a great time to pick up a new hobby!
27. Something that has surprised me about living with an illness/medical problem is: Life still goes on. It's amazing how quickly life with medical problems becomes your new normal and how hard it becomes to remember life before those problems came along.
28. The nicest thing someone did for me when I wasn't feeling well was: Send me a card through the mail; spend time talking to me via webcam; bring me a magazine and a big cup of tea.
29. I'm involved with Invisible Illness Awareness Week because: I've been living with my medical problems since my early teens and, despite being aware of the ongoing calamity with my leg, my medical problems feel more invisible than ever to a lot of people I know. I've been dealing with it for so long, it's just become normal to the people around me. But it's anything but normal and I wish people realized that.
30. The fact that you read this list makes me feel: Sad and defeated - if you're still reading these memes on my blog, it means that I'm still dealing with the same problem that I was when I started this blog in 2011 (and since the actual problems started in 2006). I've gone from an awkward pre-teen to a university degree and college diploma wielding nurse who has lived on her own, knows how to drive a care and is going on an oversees adventure in a little over a month. But my leg is still broken. That downright sucks.
No comments:
Post a Comment